Rare Disease News

New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

Published August 24, 2015 by NORD

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New video promotes awareness and educates doctors about Neurogenic Orthostatic Hypotension

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Guest Blog: A Parent Advocate & Author Discusses Courage

Published July 16, 2015 by NORD

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Patient Stories

By David Cry, Guest Blogger Courage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of The Adrenoleukodystrophy (ALD) Foundation. …

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The Fight for a Cure for Duchenne

Published June 18, 2015 by NORD

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Patient Stories

Michael’s family knew life would change after having children, but they could never predict how much.

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Zan’s Journey: Diagnosed with SMS

Published June 12, 2015 by NORD

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Patient Stories

Zan was diagnosed on the Autism spectrum, but his mother knew there was something different going on.

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The Will to Live and the Strength for a Cure

Published December 23, 2014 by NORD

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The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life

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Saving Eliza

Published December 23, 2014 by NORD

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I’m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October

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Life is a Special Occasion

Published December 23, 2014 by NORD

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Alena Galan is a happy 16-year old girl full of life and wise beyond her years. She can light up a room with her quick-witted charm and energetic personality. She …

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Multiple Endocrine Neoplasia Type 1: One Family’s Fight

Published December 23, 2014 by NORD

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Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her …

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Taking Action for ACD

Published December 23, 2014 by NORD

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On February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces. …

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Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September

Published September 2, 2014 by NORD

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Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17

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